American Nephrology Nurses Association Greater Puget Sound Chapter
Kidney Early Education Program (KEEP) What Your Kidneys Do and What Happens When They Fail Treatment Options: Hemodialysis Treatment Options: Peritoneal Dialysis Treatment Options: Kidney Transplant Choices: Making the Treatment Decision Preservation of Kidney Function Healthy Eating: Eat Well and Eat Smart Financial and Resource Information Live Healthy and Live Long Coping and Living with Kidney Disease Medication Information and Glossary
Patient Education Chapter 1 Page 1 Kidney Early Education Program (KEEP) Program Objectives At the completion of KEEP, participants will be able to: 1. Reduce anxiety, stress, and misinformation for themselves and their families in the early stage of chronic kidney disease. 2. Continue activities of daily living. 3. Remain compliant with the medical regimen. 4. Discuss health care issues with care providers. 5. Feel empowered to make well-informed treatment choices and realize that there is life after dialysis. 6. Use the group as an information support for themselves and their families. 7. Make early contact with the dialysis facility, so that treatment alternatives as well as financial issues can be discussed in more detail. American Nephrology Nurses Association Greater Puget Sound Chapter
Chapter 1 Page 2 Forward by Belding H. Scribner, MD I have been taking care of dialysis patients for over 30 years, and diabetics for over 50 years. In each type of patient, one observation stands out above all others. Those dialysis patients (and diabetics) who over time came to know almost as much as their doctors knew about their treatment and how it affected them coped most successfully with the constraints of the treatment and made the best life adjustment. Here, curiosity definitely did not kill the cat. And, by the way, these knowledgeable patients were not necessarily the most popular patients, either. This syllabus is part of an invaluable introductory course for patients who are soon to embark on a lifelong involvement with renal replacement therapy. This course offers a unique opportunity to begin early to acquire the knowledge that can mean so much to your success as a patient in the years ahead. Paying close attention to what is taught in this course will provide the knowledge base that you will need to learn how dialysis works to make you well. This knowledge base will prove especially helpful at the start of dialysis when things happen quite fast during the first few weeks. It also will permit you to learn more quickly about dialysis and how it affects your health and well being. Finally, a word of caution. The well-known saying, A little knowledge is a dangerous thing, applies in this context. It will be at least six months after you start on dialysis therapy before you ll know enough to comment to professionals on your treatment. In the meantime, you can learn much faster and more in depth if you listen carefully to what is being offered in this excellent introductory course. If you do so, your curiosity will be aroused, causing you to want to better understand what is happening to you and around you when you start dialysis, instead of just putting out your arm and expecting the staff to take care of you. By paying close attention from the beginning, you will acquire knowledge that is so essential to enjoying to the fullest your new life on renal replacement therapy. Note: Belding H. Scribner (1921-2003) was Professor Emeritus, School of Medicine, University of Washington, who made chronic hemodialysis a reality.
Chapter 1 Page 3 Class Overview 1. Introduction In this section, you will be introduced to each of the participants, moderators, and observers. A brief explanation of the history and goals of the KEEP program will be provided. 2. What Your Kidneys Do and What Happens When They Fail We will cover the basic structure and functions of the kidneys and how kidney disease can affect how you feel. 3. Treatment Options: Hemodialysis In this section, we will cover hemodialysis, one of the treatment choices you have when your kidneys fail. The pros and cons of this choice will be discussed. The different types of dialysis access will also be covered. 4. Treatment Options: Peritoneal Dialysis We will discuss peritoneal dialysis, which is another treatment choice. Some of the pros and cons of this treatment will be discussed to help you decide which treatment is right for you. 5. Treatment Options: Kidney Transplant In this section, we will cover kidney transplantation. The pros and cons of this treatment choice will be discussed. 6. Choices: Making the Treatment Decision This section details and pros and cons of each treatment choice, and provides worksheet-style pages for making your own treatment decisions. 7. Preservation of Kidney Function Information will be given that you can use to help keep your kidneys working as well and as long as possible. 8. Healthy Eating We will discuss the diet recommendations for people with kidney disease.
Chapter 1 Page 4 9. Financial Resources In this section, we will introduce sources of financial help that may be available to you and how to access that help when you need it. 10. Live Healthy and Live Long This section summarizes what you have learned so far in this course, and helps you put the information in perspective. 11. Coping with Kidney Disease This class will cover how to live with kidney disease. Other kidney patients will offer tips and advice on how to live well while dealing with kidney disease. 12. Glossary This section provides definitions for terms related to health care and kidney disease.
Chapter 1 Page 5 Introduction Welcome to the Kidney Early Education Program (KEEP). The information in these classes has been put together by volunteers from the Puget Sound community, including kidney patients, doctors, nurses, dietitians, social workers, and financial counselors. The people who will be discussing these issues during the classes are also volunteers from the area. There will be a kidney patient at each class to act as a moderator. The goal of these classes is to teach you about kidney functions, kidney disease, and how kidney failure may affect your life. Kidney disease affects over 13 million people in the United States. In the 1960s, doctors developed a way to treat people with kidney failure called dialysis. Better techniques for kidney transplantation were also being developed during this time. In 1973, Medicare started paying for dialysis. Today, about 400,000 people in the U.S. are on some type of kidney replacement therapy. The number is increasing by 6% a year. The U.S. spending for kidney disease in 2001 was $22.8 billion. Anyone can have kidney failure any age, any race, and walk of life. We believe the more you know about kidney disease and your health, the better off you will be. The information we will give you is divided as shown in our class overview. The information is fairly general, and is here as a reference only. You will need to get detailed information about how things relate to you from your doctor. There is a glossary (see Section 12) in the notebook to explain any unfamiliar words you might come across. We encourage early referral to this program from nephrologists. The goal is to have patient referral when the serum creatinine is 2.0 to 4.0.
Chapter 1 Page 6 Questions? Your questions are important. Call your doctor or health care provider if you have questions or concerns. Acknowledgments We would like to thank the Kidney Patient Association, the Greater Puget Sound Chapter of the American Nephrology Nurses Association, and University of Washington Medical Center Service League for their financial contributions. Special thanks go to each of the following people or organizations for contributing to this project: Suhail Ahmad, MD William Couser, MD Allison Greely, RN Kathy Harvey, RD Cindy Henkel Janey Haynes, RN Ruth Liles, ARNP Holly McNeill, MSW Sharon Pahlka Kristi Ross, RN Debra Taylor Annie Tu, ARNP ANNA Chapter 503 City University UWMC Service League American Nephrology Nurses Association Greater Puget Sound Chapter Renal Clinic University of Washington Medical Center Box 356153 1959 N.E. Pacific St. Seattle, WA 98195 206-598-2844 University of Washington Medical Center 07/2004